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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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May 2013 Invest in ME newsletter

Discussion in 'General ME/CFS News' started by Sasha, Jun 1, 2013.

  1. Sasha

    Sasha Fine, thank you

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  2. SpecialK82

    SpecialK82 Senior Member

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    Just had a moment to skim, but noticed this (bottom pg 6):



    "This year we would also like to thank the Edward P. Evans Foundation for contributing to the costs of the conference. The Foundation is also a major funder of ME research with recent awards to OMI Merit and Griffith University showing a commitment and vision which is to be welcomed as we try to facilitate international collaboration and sharing."


    Wow - Edwards P. Evans Foundation - you rock!!! I wish we knew to thank them for these contributions when the OMI-Merit grant ecard was going around.


    I just had a look at their website and it says "the Foundation's primary mission: supporting transformational and collaborative medical research in the areas of Myelodysplastic Syndromes and Acute Myeloid Leukemia"


    Interesting that they are helping us with CFS, we ae lucky to have their support!! :)

    Now back to the Invest in ME Conference (don't want to hijack the thread), thanks for posting Sasha :thumbsup:
     
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  3. Sasha

    Sasha Fine, thank you

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    Not at all, that's very interesting - and the thread is about the newsletter, not the conference, so this is fair game!

    There's also a web address in there for pre-registering with OMI's 'Patient Portal' - 'big data'! - but it doesn't seem to be operational yet. Interesting to see that they've scooped the world on getting the web address, though! :cool:
     
    SpecialK82 likes this.
  4. Merry

    Merry Senior Member

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    My mother, who for decades suffered from ME/CFS symptoms (even more severe than mine) but was never diagnosed, ended up in the last few years of her life with myelodysplasia. She was told it was a rare disorder, and yet within a few years after her death, the father in a family that mine was closely connected to socially, through marriage (one of my brothers married one of the daughters), was also diagnosed with myelodyspasia. He didn't live long. Later I was told that one of this man's daughters (a sister of my sister-in-law) had been diagnosed with CFS. Perhaps someone at the Edward P. Evans Foundation has heard other such stories.
     
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  5. SpecialK82

    SpecialK82 Senior Member

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    Hi Merry! :)

    I'm blown away by your story. I've copied in a bit about myelodyspasia from wikipedia at the bottom of this post. I totally think you are right. If you look at the Edward P. Evans Foundation website http://epefoundation.org/ and choose "Supported Research" (2nd tab across top menu bar), you can see the different projects that they are supporting.

    The project at Griffith University is calleds "Investigation of Immunological and Genetic Features of CFS and MDS". They must be trying to tie these two together, yes?

    This is huge!! If there is a link, we may be able to partner up with MDS associations somehow. Maybe we could get the government more interested in CFS if it is linked with MDS! I think this could use some investigating and would make a terrifc front page article here. I wonder if Dr. Koegelnik would have an opinion on it? It would be interesting if we find an MDS forum and ask people if they have ever had CFS type symptoms......



    The myelodysplastic syndromes (MDS, formerly known as preleukemia) are a diverse collection of hematological (blood-related) medical conditions that involve ineffective production (or dysplasia) of the myeloid class of blood cells.[1]
    Patients with MDS often develop severe anemia and require frequent blood transfusions. In most cases, the disease worsens and the patient develops cytopenias (low blood counts) caused by progressive bone marrow failure.
    The outlook in MDS is poor, and 20 to 30% of patients will progress within a few months or years to refractory acute myeloid leukemia. The median survival varies from years to months. [2]
     
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  6. Merry

    Merry Senior Member

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    Thank you, SpecialK82. My family's story makes me sad -- and makes me wonder what exactly has transpired that several of us became ill. You are kind to take so much interest and to go to the trouble to look up information. I look forward to checking all the links you provided.

    I remember telling this story (of a possible link between CFS and myelodysplasia) to anciendaze, in response to one of his blog posts quite a long time ago. If I remember correctly, he said he'd heard similar stories from others.

    Thanks again. Your reply brightened my day.
     
  7. Merry

    Merry Senior Member

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  8. SpecialK82

    SpecialK82 Senior Member

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    Thanks for the link Merry, I had not read that blog - it makes alot of sense.

    I found an MDS forum and read through some of the posts, it sounds like a terrible illness. I guess one of the first symptoms is anemia. I'm so sorry that your family suffered through this heartbreaking disease.
     
    Merry likes this.

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